Monday, Jan. 25, Through Sunday, Jan. 31 - This was the first week in nearly 2 months that I wasn't consumed with conference calls, business plans and budgets. The last 2 months of the year and the first month of the new year have been chaotic to say the least, but now that we're getting past January, I'm finding that my days are becoming more manageable. Don't get me wrong, I love my job, but when you spend the majority of your day on conference calls, it makes it tough to get the rest of the work done.
When I went for my workout this week, Emily and her 2 PT students transferred me from my wheelchair to the therapy table, and we worked on balance, range of motion and flexibility. Everything seems to be going great, and it was nice to meet Emily's students and have a chance to work with them. Working with PT students gives me the opportunity to introduce them to SMA, and both of them were extremely open to not only learning about SMA, but also working with me. Next week, Alex will perform the dry needling procedure on my right bicep and supinator muscle. She did this procedure a couple weeks ago on the supinator muscle, and it really helped. I actually went 5 days without this muscle twitching or spasming, so this may be something new that we add to my biweekly core strengthening exercise routine. I've included some pictures in my photo gallery of this dry needling procedure. Click HERE to view the pictures.
In this week's video, I discuss Biogen Pharmaceutical’s DEVOTE clinical trial. The FDA recently gave Biogen approval to resume this trial, and the purpose of this study is to see if higher dosing amounts of Spinraza would benefit those of us that are on this treatment. Click HERE to view my video.
I hope that all of you had a fantastic week. Please do something this upcoming week, that will make you a better person. God bless you, and I'll see you in a couple weeks.
Monday, Jan. 18, Through Sunday, Jan. 24 - The word crazy wouldn’t even begin to describe the type of week that I just had. The 2 big agenda items that I had on my calendar for this past week were to finish my business plan, and to also finish my preliminary work budget for the division that I’m responsible for. On Wednesday, I was able to present my business plan to the COO and CEO of BioNews, and after getting their approval, I could mark this off of my list. Now, the only thing I have to get through is my budget, and hopefully, approval for my budget should come in the next couple of weeks.
When I went for my workout this week, Alex and Emily deciding that it was time to do some dry needling on my right forearm. The supinator muscle that runs from my bicep to my wrist was twitching and spasming really bad, so their hopes were that the dry needling would relax this muscle. While I wasn’t necessarily nervous about going through this procedure, I did have some reservations as to whether or not it would work. The procedure itself was painless, because the needles that they use are hair thin and extremely sharp. The next day, on Wednesday, my arm felt much more relaxed, and the twitching and spasming have been minimal throughout the week. This was a huge relief, and Alex and Emily said that we would do this every other week when I go through my core strengthening exercises. This upcoming week, Emily and her 2 PT students will transfer me from my wheelchair to the therapy table and we will work on balance and range of motion exercises. I’ve updated my photo gallery with a few pictures of this procedure. Click HERE to view the pictures. I also put a brief video of this procedure on my Instagram page. Click HERE to view the video.
Next week, my next video will discuss some exciting news regarding Spinraza. The FDA just granted Biogen permission to resume one of their clinical trials, where they are testing the safety and efficacy of increasing the dosing amounts of Spinraza. Be sure to watch this video, because I’m hoping to give you some news that you can speak to your doctors about. [The picture of the thumbnail that I’m going to be using it next week’s video is at the top left-hand portion of this journal entry.]
This coming Wednesday, the company that I purchased my new wheelchair from are planning to come out and finish all of the adjustments so that I can start using this chair. While I’m still somewhat nervous about going from one wheelchair to the other, the other chair is much more technologically advanced, and I’m looking forward to some of the new things that I should be able to do in this chair that I couldn’t do in the one that I’m presently using.
I hope that all of you have had a fantastic week. Please do something for yourself this upcoming week that will make you a better person. God bless you, and I’ll see you next week.
Monday, Jan. 11, Through Sunday, Jan. 17 - If I told you the kind of week that I had, you probably wouldn’t believe me. I had just finished my 2021 Business Plan for the division that I’m responsible for, and the excitement of knowing that I would soon be sitting in my new wheelchair was starting to build. They weren’t able to do many adjustments on my chair when they brought it out to me on Thursday, December 31. They had me on their books to come back to my house and finish the adjustments the next week, but the rep there was supposed to do these adjustments had been scheduled to attend an ALS conference that he didn’t even know about. So, they rescheduled me for this past Friday, January 15. The day before they were supposed to come out, I received a message telling me that for some unforeseen reason, they would have to reschedule again. This is when my week started to decline, and I’ll explain further in just a moment.
One of the good things that happened to me this week was when I went back to physical therapy, and my physical therapist, Emily, returned from maternity leave. I hadn’t seen her in nearly 2 months, so it was nice to finally be able to work with her again, along with Alex, who had been working with me while Emily was out. I’m lucky that I have to fantastic physical therapists, so it was nice to be able to get out of my wheelchair and onto the therapy table to get stretched out. While performing my range of motion exercises on my right leg, Emily held my right foot up in the air and asked me what happened. I knew exactly where she was going with this conversation, but I acted all innocent and said what do you mean? It didn’t take her long to put on her “mom”, and she told me to look at my foot and ankle. She said that this was the worst that she had ever seen it with regards to the swelling. She asked me if I’d been wearing my compression stockings while she was out, and I had no excuses. I told her no, and it looks could’ve killed, I would be 6 feet underground right now. I’ll have to admit that the ass chewing that I got was well-deserved. That’s one thing that I like about Emily, is that she doesn’t hold back, and she doesn’t pull any punches. To be honest with you, Alex is the same way, so I have a bad feeling that I’m never going to be able to get away with anything. [Probably rightfully so.] We didn’t do any balance exercises, because it had been over 3 weeks since I’ve been on the physical therapy table, so Emily told me that we would work doubly hard on my balance the next time if they transferred me. Next Tuesday, January 19, Alex will perform some dry needling on the supinator muscle on my right arm. The supinator muscle runs from your bicep down to your wrist, and this is the muscle that keeps twitching in spasming. While deep tissue massage has helped, it only helps for a few hours. Since this muscle continues to twitch and spasm, both Emily and Alex agreed that dry needling may help to relieve some of these problems. While I don’t necessarily look forward to having needles shoved in my arm, I’m at the point to where I’ll try anything.
Now, getting back to my new wheelchair. After being delayed another week, I was told by the rep that the only time that he could meet this coming week would be on Tuesday. I told him that I would trying to rearrange my physical therapy schedule, because Tuesday’s are the days that I go in for my PT. I started thinking about how many times I have been delayed by the company that sold me my new wheelchair, and I finally came to the conclusion that they are the ones that are going to have to work around my schedule, instead of me working around their schedule. I could’ve easily asked Emily and Alex if I could come in on a different day, but this wouldn’t have been fair for me to ask them to work around someone else’s schedule. I wrote the rep message back via email, and I told him that we would have to plan on meeting in 2 weeks, because I was not able to rearrange my PT schedule. It’s about time others start working around my schedule and quit asking me to always accommodate them.
In this week’s video, I discuss a question that’s been floating around the SMA community for over a month. Many of you have asked the question regarding whether or not patients with SMA should take the COVID-19 vaccine. In my video, I review an article that was recently published by SMA News Today, and this article goes into great detail regarding the vaccine and the rollout schedule that was developed by the Centers for Disease Control. Click HERE to view my video.
I hope that all of you had a fantastic week, and I want that you, your family members and your friends are staying safe and healthy. Please do something for yourself this upcoming week it’s going to make you a better person. God bless you, and I’ll see you in a couple weeks.
Monday, Jan. 03, Through Sunday, Jan. 10 - While I was excited to go back to work, after being on vacation for nearly 3 weeks, I wasn't necessarily surprised to be hit with an exorbitant amount of work to catch up on. I'm one of the senior directors of BioNews, the company that I work for. All of us have been working on our business proposals for 2021, and after weeks and weeks of work, I finally have mine finished and ready to be submitted. Take a look at the graphic on the side of my journal entry. This is about what I looked like after getting it completed.
I finally got to go back to physical therapy last week, but we really didn't do too much, other than my reevaluation. My normal physical therapist, Emily, will be returning this next week from maternity leave, but Alex has been doing a great job with me. After my reevaluation, she did some deep tissue massage on the supinator muscle in my right arm, because that muscle has been twitching quite a bit lately. We were going to do some dry needling, but since we didn't have enough time, we're planning on doing that in the coming weeks. When I go back for my workout on Tuesday, Emily and the new DPT, Isaac, will transfer me from my wheelchair to the therapy table. I'm looking forward to getting stretched out, because my right hip flexor is getting pretty sore.
My next video will deal with the COVID-19 vaccine. There's been quite a bit of discussion within the SMA community as to whether or not those of us with SMA should take this vaccine. I give you my opinions on what I'm planning on doing, and make some suggestions that I hope that you'll find useful.
I hope that all of you had a fantastic week, and I ask that you do something for yourself this upcoming week, that will make you a better person. God bless you, and I'll see you next week.
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